I will be starting Docetaxel (Taxotere) near the end of the month. PC has become castrate resistant and oncologist says I should not wait for a trial of LU 177 that does not require prior chemo since it is unsure when it will start and has had a few delays already.
So I am wondering what to expect in terms of side effects ( will I be able to work at a reasonable percentage of my current ability) and also some statistics on longevity or effectiveness of this treatment. I know there is a lot of variability but just want to get some approximate answers.
How long do people generally last on Doxetaxel? ADT worked for me for a little under two years.
The side effects sound pretty awful especially peripheral neuropathy. I read the percentages for the side effects but would like to know what people really experience.
Is there any way to avoid peripheral neuropathy.
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spencoid2
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Ice packs on hand and feet should help. I ended up with P.N. anyhow, but it didn't show up much until after cycles 8 and 9. Xtandi also exasperated my problems. (full dose [160 mg] made me an invalid ).
My greatest pastime enjoyment right now is as the bass guitarist in a busy gigging band and P.N. in my hands is my biggest fear with the thought of doing chemo. How bad was yours and how long did it last (or is it permanent!)?
Total PN at first..Hands to above wrists and feet to above ankles. Two hands to pick up a glass of water and very bad balance... Recovered over time to where my toes can move to balance me and with Gabapentin I can type and do other normal activities. Lots of trouble tying flies on a fishing line...
I play in a busy band too, guitar player. I’ve had more cramping than neuropathy but as with the pre existing basal joint arthritis in my thumbs, everything goes away once the show starts😀 LOTS of water.
Good to hear you can continue playing, London. I guess like all treatment SEs, everyone gets different levels of effect so it's just a lottery! Shooter's total PN is scary.
it is scary for sure. I also believe plenty of cardiovascular exercise, weight training and stretching has kept it away in my case. There’s no science to support this, but it so obviously beneficial for my overall health I wouldn’t doubt for a second it may be a factor.
My husband has had his 2nd Docetaxel treatment this week. They gave him a steroid prescription this time to take for a few days afterwards to help with his leg pain that he got after the first treatment. So far so good! I have him wear ice packs on his hands and feet during the treatments and I bring a nice warm blanket for him! He drinks lots of water the day before, day of, and day after treatment. He has fatigue but most days he is not in any pain. He is also on Lupron shots every six months (only has had one so far; next one in February) and he takes Nubeqa (darolutimide) 2x a day.
The incidence of neuropathy is not that high with Docetaxel at the dose prescribed for prostate cancer. Also, in many cases it's a lower grade and resolves after stopping. The risk also goes up with the number of cycles. I did 6 cycles and never had any neuropathy.
I wouldn't plan on doing a lot of strenuous activities the first week after infusion. Desk jobs are fairy manageable, especially if you aim your infusions for Thursday and take some of the bad days over the weekend. Second week is almost normal, and third week is normal.
It's comparable to a bad cold without the running nose for me for the first week. Not the end of the world by any means, but you probably won't be running around a lot. It's well worth it if it works.
I had six rounds of Taxotere in 2015 and it was pretty rough. Rounds one and two weren’t too bad but subsequent rounds became more difficult. Started losing hair after round two so shaved my head and wore hats, fingernails became loose, the inside of my mouth peeled and food didn’t taste good. Fatigue and flu like feeling that would improve after a couple of weeks but soon it was time for the next round. I did get numbness and neuropathy in my fingers and feet that lasted about 4-5 years, it wasn’t horrible just annoying. My hair grew back on my head better than ever, eyebrows and everywhere else is still kinda thin.
You’ll get through it, I don’t tell you all this to scare you, that was my experience others have lesser symptoms, just plan to reduce your activity level. Embrace the suck, it’ll be ok.
Chemotherapy with docetaxel was not nearly as bad as I had feared before I started. I had many of the most common side effects.
The steroids before and during each treatment meant that I was wired that day and the next, and then my mood and energy crashed for the rest of the week.
I didn't get thrush or mouth sores, but my tongue did feel like it had been scalded for that first week after each treatment. There were significant taste perception changes, none of them pleasant. Some people chew ice during treatments to reduce the mouth problems. I like the theory, but I don't know whether it really works.
Nausea became more of a problem as treatments progressed. Ginger (ale, tea, candies) helped somewhat, but eventually I needed the prescription anti-nausea meds.
Neuropathy in fingers and toes built up over time. Some people chill the feet and hands during treatment. Again, I like the theory, but I don't know whether it really works.
Fatigue became a problem with the later treatments as well. It was an odd feeling when walking to have my knees wobble and my legs shake, but not be out of breath at all.
I had the expected hair loss. Body hair first, then scalp hair. What surprised me was when I lost eyebrows, eyelashes, and nose hair. It took a few months, but eventually it all grew back.
I didn't lose any fingernails or toenails. I am glad to have been spared that.
Week 1 starts great, then finishes awful.
Week 2 usually has gradual improvement.
Week 3 is almost back to normal. Then you get to do the cycle all over again.
It's a marathon, not a sprint. Take care of yourself. Conserve your resources. Stay hydrated. Stay fed. Stay rested. You can get through it.
I did 11 doses of that stuff. The side effects were pretty nasty, considering most drugs don't have any side effects for me. Worst was loss of strength, neuropathy, hair loss (permanent, it appears) but also other effects including weight loss... What really made me unhappy was that in the end chemo didn't help very much at all--not enough to cover the side effects!
Going with LU-177 next, perhaps at the end of the year.
spenc.... I understand your apprehension. In fact if I had read the comments offered by a lot of the people, I would worry. However, I didn’t. I listened to the MO and his experienced staff at the infusion Center. Sure, I had blood levels checked before every infusion. I had people ask questions about neuropathy. I had people examine my finger nails and toes nails. Had people checking for thrush. I also had a positive attitude that with every infusion, I was killing the little bastards!
I never iced! I wanted the poison going through every part of my body, vascular, lymphatic, organs, included........ I sucked on ice chips once for a very dry throat. I took off from work on the day of infusion and the day after resting my body.
I was 58 years old in 2004. Today I am 75. Chemotherapy was the best treatment for me. It was also the first treatment I had, along with Lupron/Eligard for metastatic prostate cancer. I was young with a strong body and a tumor burden that was minimal- two Mets in the spine.
I also was enrolled in a chemotherapy with Lupron/Eligard clinical trial for six months. Essentially, I had nine infusions of Taxotere alternated with nine 24-hr infusions of Adrimyacin, also called the Red Devil. I also alternated two orals with each; plus 30 mg of Prednisone daily for the six months. It was no party, but I would not have changed a thing.
I stayed on Lupron/Eligard for 6 1/2 years. I had to be convinced by my MO that I could stop; only with a what do you have to lose, if PSA rises, we simply restart the hormone injections. When testosterone did not come back, I added testosterone topically; since January of this year, I inject.
The worst side effect I suffered from was visceral fat. I went from 183 pounds to 173 pounds and added another 20 pounds in the next ten years, in January, I balanced my hormones and today weight 204 pounds. Take heart in knowing that your oncology team has one desire and it matches yours - kill the little bastards! Most side effects are easily over comed - example, if I had nausea, then I found that only Zofran worked.
Every time I wondered about why I was doing this and thought about giving up, I took joy in the fact that the little bastards were dying before me, do not fear chemotherapy with ADT, the alternative really sucks.
My experience...... those who waited to start chemotherapy had a harder time. If blood levels plummeted, then the chemotherapy was either stopped or delayed.
You asked for experiences with chemotherapy. I have given you mine. However, I recognize that others have a real hard time depending of body strength and tomor burden. I wish you the best. List3n to your oncology team. They really have your best interests at play. Finally, shun negatively from family and friends. “Oh you poor darling.....” embrace positively, and walk, no run away from all who a negative.
good to hear all the comments. i was really depressed last night and had to force my big red Poodle to cuddle before i could get any sleep. he seems to have understood the need.
i ordered three sets of hand and foot coolers from Amazon which were essentially free because i got their stupid credit card.
i am almost sure that i am going to get a little portable freezer for the ice packs since we have to travel 5 hours to the cancer center. i can take it in to the infusion center and cycle the three sets through for continuous chilling or at least that is the plan. i am not too concerned that there might be cancer in my hands and feet that would not be treated or at least i don't think i should be.
I have had long and short hair and can live with none. a friend has a purple streaked long hair wig that he said i can borrow. that together with my purple "fuck cancer you fucking fuck" tee shirt should go over well. i would look right at home in Walmart
DH was dreading when it was time for chemo. His MO decided to break the taxotere into smaller, more frequent infusions. So he’s having 18 sessions - 3 weeks in a row, then one week off before repeating 6 times. He had some neuropathy in his feet from long term Lupron before starting chemo. When it started getting worse, they cut his taxotere back 20% to keep it from getting worse. He has used ice slippers, hat and mitts. He gets worse from the steroids, then crashes on the weekend. Dr has made every attempt to minimize chemo side effects . He has always focused on QOL. Make sure you keep your MO informed . It’s doable.
got the picture and it is beautiful but low res. if i add it to poodles.com i think i would rather have a better one. poodlex.com got all messed up with new version of whatever program runs it. there is no mail link anymore but there is one on spencerserolls.com if you contact me that way ( do not want to put my email address on this forum as it might be monitored by scammers) i can reply and then you can send a better picture to my regular email. i think you can also write to anything like my name at spencerserolls.com i am going to check to see what it takes to add a post to the blog haven't done it in a long time.
I can't tell you how reassuring all of your posts in this thread have been! I've done two rounds so far of docetaxel+carboplatin, and I'm finding that I have similar cycles of energy. I joke with myself that every day I wake up in a different body, I never know what to expect. I'm a week out and now my heart is running fast, where did that come from!
And they really do try to tune in the drugs. For example they had me doing 16mg of dexamethasone the day before and the day of infusion, (plus 8 for two days after) then for round two they cut me down to 8mg and I felt so much better. The dex was making me dizzy.
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